Tuesday, November 10, 2009

New Item On The Agenda

Look who was all bright-eyed this morning!

Jane was quite the party girl last night. She stayed up ALL NIGHT LONG with one of her favorite nurses, the Awesome Allie. Really. ALL night. She took an Ativan-assisted nap for about three hours early this morning, then was up and happy and checking herself out in the mirror when I arrived.

She had an echocardiogram (she seemed to really like the Doppler noise -- it calmed her every time the tech pulled it up), and then we had a good long snoogle session (she pretty much passed out from all the awake time and excitement, and slept for about three hours) followed by a much-needed bath.

She was so damn cute today, I could have eaten her with a spoon. And this cardigan? Divine. (Thank you, Carolyn!)

So, about that echo. Turns out Jane has (hold onto your virtual hats people) RVH, or right ventricular hypertrophy. Really, universe? Gah. I'm almost too tired to be properly pissed off.

You know how certain kinds of athletes (like rowers) get enlarged hearts? That's healthy cardiac hypertrophy, and it usually affects the left ventricle. Some babies like Jane with severe BPD get pathological hypertrophy. Pathological, never a good thing. Basically, her heart's having to work too hard, and the muscle in the right ventricle is getting too thick, shrinking the size of the chamber.

There are experimental drugs that may or may not help. Nitric (yes, our good friend nitric) seems to help. But really, the only thing that can for sure help is for her lungs to get better. Healthy lungs = less stress on the heart.

So off we go for another, ahem, conversation about our girl. Another discussion in which they will almost surely tell us that time and good nutrition and managing the vent so it causes as little damage as possible are all keys to getting her better, blah blah blah. We're definitely heading for a trach. I don't think there's any way she'll be home by Christmas.

I'm going to take a bath now and then hide under the pillows.


mommatosena said...

Oh Tia seems like it is really pouring at the moment. Although extraordinarily cute in that cardigan! I am still holding the prayer home for the holidays and I hope the bath and pillows worked some magic for your sanity.

artandsoul said...

Well, I have to say that the new outfit got me all distracted and I had to reread your post two or three times.


But man she is adorable! And she looks like she's getting really big!

Tia, I like to light candles when I am praying for someone, and do a little ritual meditation and then leave the candle burning and sort of see the prayer continuing all the while the flame is burning.... sort of like a prayer extension.

Well, I'm moving you and Jane off of tapers onto my really big pillar candles!! I'm going to put them in the kitchen and keep them lit all day. Sage too. And prayer cards of saints.

Baths all around are good ways to cope. Sending you lots of healing thoughts tonight. I hope you sleep well.


Anonymous said...

Tia -- It's Annie. Hang in there! She is absolutely adorable in her brown cardigan. Marley, Kate and I waved as we drove by over the weekend. We're always thinking about you!